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About The Speed of Dark

Tenth anniversary edition • With a new Introduction by the author

In the near future, disease will be a condition of the past. Most genetic defects will be removed at birth; the remaining during infancy. Lou Arrendale, a high-functioning autistic adult, is a member of the lost generation, born at the wrong time to reap the rewards of medical science. He lives a low-key, independent life. But then he is offered a chance to try a brand-new experimental “cure” for his condition. With this treatment Lou would think and act and be just like everyone else. But if he was suddenly free of autism, would he still be himself? Would he still love the same classical music—with its complications and resolutions? Would he still see the same colors and patterns in the world—shades and hues that others cannot see? Most important, would he still love Marjory, a woman who may never be able to reciprocate his feelings? Now Lou must decide if he should submit to a surgery that might completely change the way he views the world . . . and the very essence of who he is.

Thoughtful, provocative, poignant, unforgettable, The Speed of Dark is a gripping journey into the mind of an autistic person as he struggles with profound questions of humanity and matters of the heart.

Praise for The Speed of Dark

“Splendid and graceful . . . A lot of novels promise to change the way a reader sees the world; The Speed of Dark actually does.”—The Washington Post Book World

“[A] beautiful and moving story . . . [Elizabeth] Moon is the mother of an autistic teenager and her love is apparent in the story of Lou. He makes a deep and lasting impact on the reader while showing a different way of looking at the world.”—The Denver Post

“Every once in a while, you come across a book that is both an important literary achievement and a completely and utterly absorbing reading experience—a book with provocative ideas and an equally compelling story. Such a book is The Speed of Dark.”—Fort Lauderdale Sun-Sentinel

“A remarkable journey [that] takes us into the mind of an autistic with a terrible choice: become normal or remain an alien on his own planet.”—Mary Doria Russell, author of The Sparrow

“A powerful portrait . . . an engaging journey into the dark edges that define the self.”—The Seattle Times

About The Speed of Dark

Tenth anniversary edition • With a new Introduction by the author

In the near future, disease will be a condition of the past. Most genetic defects will be removed at birth; the remaining during infancy. Lou Arrendale, a high-functioning autistic adult, is a member of the lost generation, born at the wrong time to reap the rewards of medical science. He lives a low-key, independent life. But then he is offered a chance to try a brand-new experimental “cure” for his condition. With this treatment Lou would think and act and be just like everyone else. But if he was suddenly free of autism, would he still be himself? Would he still love the same classical music—with its complications and resolutions? Would he still see the same colors and patterns in the world—shades and hues that others cannot see? Most important, would he still love Marjory, a woman who may never be able to reciprocate his feelings? Now Lou must decide if he should submit to a surgery that might completely change the way he views the world . . . and the very essence of who he is.

Thoughtful, provocative, poignant, unforgettable, The Speed of Dark is a gripping journey into the mind of an autistic person as he struggles with profound questions of humanity and matters of the heart.

Praise for The Speed of Dark

“Splendid and graceful . . . A lot of novels promise to change the way a reader sees the world; The Speed of Dark actually does.”—The Washington Post Book World

“[A] beautiful and moving story . . . [Elizabeth] Moon is the mother of an autistic teenager and her love is apparent in the story of Lou. He makes a deep and lasting impact on the reader while showing a different way of looking at the world.”—The Denver Post

“Every once in a while, you come across a book that is both an important literary achievement and a completely and utterly absorbing reading experience—a book with provocative ideas and an equally compelling story. Such a book is The Speed of Dark.”—Fort Lauderdale Sun-Sentinel

“A remarkable journey [that] takes us into the mind of an autistic with a terrible choice: become normal or remain an alien on his own planet.”—Mary Doria Russell, author of The Sparrow

“A powerful portrait . . . an engaging journey into the dark edges that define the self.”—The Seattle Times

Praise

“Splendid and graceful . . . A lot of novels promise to change the way a reader sees the world; The Speed of Dark actually does.”—The Washington Post Book World

“[A] beautiful and moving story . . . [Elizabeth] Moon is the mother of an autistic teenager and her love is apparent in the story of Lou. He makes a deep and lasting impact on the reader while showing a different way of looking at the world.”—The Denver Post

“Every once in a while, you come across a book that is both an important literary achievement and a completely and utterly absorbing reading experience—a book with provocative ideas and an equally compelling story. Such a book is The Speed of Dark.”—Fort Lauderdale Sun-Sentinel

“A remarkable journey [that] takes us into the mind of an autistic with a terrible choice: become normal or remain an alien on his own planet.”—Mary Doria Russell, author of The Sparrow

“A powerful portrait . . . an engaging journey into the dark edges that define the self.”—The Seattle Times

About Elizabeth Moon

Former Marine Elizabeth Moon is the author of many novels, including Victory Conditions, Command Decision, Engaging the Enemy, Marque and Reprisal, Trading in Danger, the Nebula Award winner The Speed of Dark, and Remnant Population, a Hugo Award finalist. After… More about Elizabeth Moon

About Elizabeth Moon

Former Marine Elizabeth Moon is the author of many novels, including Victory Conditions, Command Decision, Engaging the Enemy, Marque and Reprisal, Trading in Danger, the Nebula Award winner The Speed of Dark, and Remnant Population, a Hugo Award finalist. After… More about Elizabeth Moon

Author Q&A

A CONVERSATION WITH ELIZABETH MOON

Paul Witcover: You’re known as a science fiction writer, but even thoughThe Speed of Dark is set in the near future, the world you depict is nottoo different from the world of today. Certain technology, such asgenetic engineering and nanotechnology, is more advanced than atpresent, but the society in which Lou Arrendale and the other characterslive and work seems contemporaneous. How much of a change of pacewas this novel for you? Is it science fiction? And if so, what makes itscience fiction?

Elizabeth Moon: This was definitely a change of pace. Occasionallyan idea or a character blindsides me and knocks me right out of what Iintended to do next. Whether it’s science fiction or not depends on thereader’s definition of science fiction. Although it’s set in the future (ornear future), the issues facing the characters are indeed those of today.

PW: What is autism? Is it a genetic condition? A mental illness? Theresult of an infection? Physical trauma? I’ve even heard infantimmunizations blamed.

EM: Autism is a pervasive developmental disorder. The diagnosticcriteria are found in DSM-IV (the Diagnostic & Statistical Manual ofMental Disorders published by the American Psychiatric Association),but this source is very much out of date for treatment and prognosis.Most children with autism are clearly born with it, and the best currentevidence suggests that something begins to be different in autistic fetuseswell before birth. It is not known whether maternal infections or traumacan cause this “difference.” It used to be considered a mental illness(which is why you find it described in the psychiatric literature), butit’s not currently given that classification. Since it occurs at higherfrequencies in families with other cases of autism and relatedneurological conditions, genetics certainly plays some role in many, if notmost, cases of autism. Some people will blame anything, howeverunlikely, and in the face of contrary data; there is no evidence that infantimmunizations cause autism.

PW: What are some of the warning signs that parents should be awareof? Where can people go for more information or help?

EM: The autistic spectrum includes a range of developmental disabilitiesthat are similar but not identical. Classical autism presents asdevelopmental delay, often global, but particularly affecting sensoryintegration; fine-motor coordination; language, both receptive andexpressive; and social interaction. The amount of delay varies widely.What a parent will notice first, most likely, is marked delay in languageacquisition, marked delay in normal social interaction, and veryrestricted activities/interests compared to other children the same age.The autistic child may not talk at all, or speak only to echo what he justheard, or repeat that jingle. He may ignore TV to sit by the bureauflicking the handles of drawers over and over. He is likely to do the samething hour after hour, day after day: stacking blocks, winding andunwinding string, some other repetitive activity. Autistic individuals havegreat difficulty learning to “read” the social cues the rest of us use—toneof voice, facial expression, etc. A child whose autism is milder, andundiagnosed until school age, will usually demonstrate very unevenabilities—excelling in one subject, and flunking in another—and willalso have the associated difficulty in reciprocal social interactions.

PW: Milder . . . Is this where Asperger’s Syndrome comes in?EM: Asperger’s Syndrome, which is related to autism in many ways,does not involve language delay—Asperger’s kids may talk early andfluently—but does involve delays and difficulties with social interactionsimilar to those in autism. As with classical autism, there is a wide rangeof severity. If a child talks “on time” but does not develop reciprocalsocial skills—can’t hold a conversation with turn-taking, doesn’t playwith others—that’s also cause for concern.All small children do things that autistic children do, all the lists ofbehaviors you may have seen in magazine articles, but normal childrenalso do much more. If they repeat advertising jingles ad nauseam, theycan also demand more cookies, ask questions, play pretend games withfriends, argue about bedtime. Normal children may also have strongidiosyncratic interests. I was horse-crazy, and made endless parades of mytoy horses. They may flap their hands, spin the wheels of toy cars, act shyand refuse eye contact, or be unusually sensitive to texture or taste, allwithout being autistic . . . if the rest of their development is comingalong at the usual rate, if these “autistic” behaviors aren’t the only onesthey have. Children do vary in their acquisition of social skills; they allhave to be “civilized” into the normal give-and-take of social interaction.What matters is not any particular behavior, but the overall pattern ofdevelopment.Since language delay has several causes, all of them important to achild’s future, any delay in talking should be checked out. The child mayhave a hearing loss or any of several other problems—autism is only oneof the possibilities—but the sooner the cause is identified and therapybegun, the better.Parents today have many resources. If they have a concern abouta child’s development, any of the basic books on infant and childdevelopment will give them some guidelines. Day-care and nurseryschoolteachers, who have seen hundreds of children, are also helpfulresources—they know when a given child is or isn’t makingdevelopmental milestones. Doctors vary in their understanding ofautism; some may be reluctant to make the diagnosis early because whenthey went to school it was a very bad one. But most family practitionersand pediatricians are at least familiar with the diagnostic criteria, and canhelp families determine if autism is a possibility.

PW: Lou Arrendale is an extraordinarily vivid creation. There have beenbooks and movies that feature autistic people before, such as Rain Man,but I can’t recall another treatment that gets inside an autist’s head asdeeply as you do here. I know you have an autistic son; how much ofLou is based on your son and your experiences in raising him?

EM: Our son was certainly the starting point and the inspiration—eighteen years of 24/7 experience provides a lot of information (he wasseventeen or eighteen when I started the book). In addition, I had readbooks by Oliver Sacks; Temple Grandin, who is herself autistic and a fineadvocate for the autistic community; Clara Park, whose autistic daughter,a talented artist, is now in her forties; and others, and had found onlinegroups of autistic individuals who demonstrated the wide variety ofpersonalities and abilities that autistic people have.Lou’s character is, however, quite different from that of our son; Louis the product of early intervention and educational advances that werenot available when our son was born. He’s also innately more intelligent,with a high IQ; our son’s is low normal. Lou is by nature a quieter andmore thoughtful person; our son is more exuberant.

PW: Despite being autistic, Lou functions better than many so-callednormal people. He has a job, friends, interests. He is highly intelligentand extremely sensitive to certain sensations and perceptions, such as, forexample, smells and textures. And his pattern recognition abilities, whichhe relies on in every aspect of his life, from his job at the pharmaceuticalcompany to his hobby of fencing to his interactions with others, arephenomenal. How typical is Lou of people with autism today in terms ofhis social skills and mental abilities?

EM: Here it makes a huge difference which generation of autisticpersons you’re talking about. Most autistic children born in the 1940sand before were characterized as having “infantile schizophrenia” andwere institutionalized early as hopeless (as in Rain Man). Only a fewexceptionally intelligent autistic children had the kind of support theyneeded to achieve independent living as adults. As late as DSM-IV, theprognosis was that only 30 percent of the most intelligent and capableautistic persons would ever live independently. However, with the adventof mandated public education for all students and early childhoodintervention, the situation has improved markedly. Social problemsare still the main reason for autistic persons not achieving fullindependence, but more and more of them are holding jobs and living inless sheltered environments. They are still earning less than non-autisticpersons of equivalent intelligence, and autistic persons who are alsoretarded or have another disability (physical or other) are still likely toneed lifelong assistance of some kind—but few now are consigned toresidential institutions. I expect that in the next five to ten years, aschildren who received good therapy in the birth-to-five-years rangereach adulthood, we will see a reversal of the DSM-IV prognosis, with60 percent or more holding jobs. Assuming, of course, that the economyimproves . . .Lou’s sensitivity to sensory input and his pattern-recognition skills,however, are common to most autistic individuals. Sensory perceptionand sensory processing differences are universal. If there is an autisticchild anywhere who tolerates tags in T-shirts or bulky seams in socks, Inever heard of one . . .

PW: How is autism treated today? Have you seen much progress sincethe birth of your son? Do you think that we are on track toward the sortsof advanced therapies available in your book?

EM: Autism is treated today in a variety of ways—the most useful beingintensive supportive therapy for young children. The earlier autism isdiagnosed, and the earlier families begin helping these children develop,the better the prognosis. Communication therapy (not just speechtherapy), sensory integration therapy, skills training (including socialskills training)—all these and other therapies, not necessarily the samefor each child, make an enormous difference. Autistic children docontinue to develop; what you have with an autistic toddler, anenormous and terrifying challenge, is not the limit of what’s possible.Certainly there’s been a lot of progress since our son was born. I hadto figure out a lot of things for myself—not much was available, at leastnot here. But after the legislation that mandated early childhoodintervention for disabled children, more and more people were workingin the field and soon began to discover what worked best. Positivereinforcementbehavioral shaping—more on the model of Karen Pryorthan the rigidity of the academics, in my opinion—works best.I definitely think that the sort of advanced therapy I wrote about iswithin reach; whether the research heads in that direction or not willdepend on funding. But in the process of writing this book, I wasreading an international neuroscience journal (Nature Neuroscience), andkept worrying that the science was catching up with the story all too fast.

PW: Lou is constantly questioning what it means to be autistic and whatit means to be normal. He comes to believe that the two are points alonga spectrum rather than wholly unrelated ways of being. I think this mustbe true because of my own experience in reading the novel. At first, Ifound Lou fascinating but alien; I could sympathize with him, but fromthe outside looking in. Then, as I read on, a curious and amazing thinghappened. I began to empathize with Lou. His way of thinking stoppedseeming alien to me and began to seem human. In fact, I began torecognize more and more of myself in him. When the demands of dailylife took me away from the book, his voice stayed with me, coloring myperceptions of the world, until I felt almost as if a part of me wereautistic. It was no longer possible for me to think of Lou as alien, and iteven became difficult to think of him as damaged, exactly. Just different.Which raises a lot of interesting practical and philosophical questionsabout autism . . . and not just autism.

EM: Doesn’t it, though! To a large degree, we (meaning society in itsjudgmental role) create aliens from humans by excluding them, bydefining them as too strange, too difficult. Human cultures have alwaysdone this. It helps a group to bond, if they define nonmembers ascompletely different. Cultures have defined other races, religions,nationalities, and even economic groups as “not really human” and thusoutside the rules that govern behavior in the group. And we’ve done itwith disabilities. Sometimes the disabled are treated as children (Weknow what’s best for you . . . ) and sometimes as monsters who must beconfined or even killed.

PW: The other side of this coin would be the criticism that you’vedescribed autism too well; or, rather, have romanticized it, made it seemappealing in its strangeness, as if to be autistic were to be like Star Trek’sData or Mr. Spock. How would you respond to this criticism?

EM:With a loud snort . . . No parent of an autistic child would everromanticize autism, or minimize the strain it places on both the child andthe society in which that child lives. Hours of screaming when nothingwould comfort him . . . cleaning up smeared feces . . . endless days andnights of struggling to understand the child’s communications, andcommunicate to him . . . nothing romantic about that at all. It was hardwork, and tough emotionally (on him as well as on us). For most of hislife, we had him 24/7, 365 days a year (ordinary baby-sitters can’tcope)—there were no nights out, no weekends off. Respite care, inthose days, was not available.But I definitely chose not to demonize autism, which is what manymagazine articles do: They treat autism as the worst, most horrible, mostalienating of the developmental disabilities, a complete and utter tragedyfor families, a wasted life with no possibility of joy or fulfillment. That’ssimply not the truth. The autistic child is a fully human child, capable ofreceiving and giving love, capable of enjoying and giving pleasure. Theautistic persons I met online, even when they described themselves asalien, demonstrated all the common human emotions and desires: Theywant to be around people who understand them, who like them as theyare. They want to have a comfortable living and working environment,to be treated with respect and dignity. They want to eat what tastes goodto them, and avoid what tastes bad. They want friends who share theirinterests; they want to enjoy life in their own way. If they believethemselves to be alien, it is because we, the “normals,” have told themover and over how impossible they are. We try to insist that they mustbecome like us to be acceptable—which makes about as much sense asinsisting that someone change his skin color or eye color or height.

PW: What feedback have you received from autists and members of theautistic community, parents, and researchers?

EM: Very positive so far. Several autists have contacted me and told methey like the characterization of Lou. I hear from parents and special edteachers that the book is beginning to spread through their communities(parents and teachers of autistic children are busy people and rarely findthe time to read books when they first come out). Researchers I wouldimagine are focused on their research and pay little attention to fictionwritten on their topic.

PW: Your novel has been compared, perhaps inevitably, to Daniel Keyes’sclassic, Flowers for Algernon. Do you think the comparison is valid?

EM: I think it’s flattering—that is a great story. On the other hand, mostpeople who’ve read both have ended up concentrating on the contrastsrather than the similarities.

PW: The title of the novel, The Speed of Dark, often contrasted byLou with the speed of light, becomes a metaphor for a lot of things:prejudice, ignorance, death. It is also, more generally, the unknown.How did your understanding of this phrase evolve in the course ofwriting the novel?

EM: When a title really works, it begins to resonate with more and moreelements of the story and its underpinnings . . . and this happened tome. At first it was more a clever than a wise choice. (It’s one of the fewplaces where our son “appears,” since he gave me the title one day earlyon. He came in, leaned on the doorframe, and said, “If the speed of lightis 186,000 miles a second, what is the speed of dark?” I gave the usual“Dark has no speed” answer, and he said, “It could be faster. It’s therefirst.”) But in the writing, the other metaphorical connections formed.The book grew after Lou, in a way, following him in a somewhatdifferent direction than I had expected.

PW: I had the same reaction to the “speed of dark” question when Louraises it in the novel. But then I realized that it was exactly the sort ofquestion Einstein was famous for asking himself; in fact, I recently readan article that speculated that Einstein might have had Asperger’sSyndrome.

EM: Many scientists and engineers have behavioral traits found in theautistic spectrum; there’s been speculation about Einstein for years. But wesimply don’t know enough about his childhood to make a firm diagnosis.There are other causes for language delay, and someone can be obsessive,absentminded, socially inept, and brilliant without being autistic. Still, itcould be true. The more we’ve learned about the autistic spectrum, themore it’s clear that many people are “a little autistic”—share some of thesame behaviors, to a lesser degree—and yet function well in the world.

EM: Having a child with autism changed my views on autism andnormality . . . writing the book gave me the chance to share those views.

PW: Did it change your relationship with your son?

EM: No. Our son is himself, not a fictional character, and ourrelationship is the product of almost twenty years of interaction. He hasno interest in the book. I tried to read him bits of it while I was workingon it, to get his reaction—and his reaction was to zone out.

PW: If the cure that is offered to Lou and his fellow autists were availabletoday, would you want your son to try it, despite the dangers?EM: I don’t know. One of the great challenges for any parent of a childwith disabilities is how to love the child as he/she is, and yet remain opento change that may be beneficial. Some people come down hard on oneside or the other of this: the parents who insist that they would neverwant their disabled child to be cured because that would invalidate theirlove for the child as he/she is, versus the ones who insist that everyoneshould leap at every chance at a cure. I can’t. Part of it is his age now. Attwo, three, four, five, I would have taken a “magic bullet” cure in aheartbeat, assuming that it had to be better than where he was. Now?Our son at this point is an enthusiastic, happy, loving young man,eagerly learning what he can in special ed classes in his high school.Losing any of those characteristics would be a terrible loss. But if hecould talk easily with the girls he so admires, if he could use his bodyand mind more easily, that would be a great gain. If/when such therapybecomes available, it will have to be his decision.

PW: It turns out that Lou’s company is not acting altruistically inoffering Lou and his fellow autists the chance for a cure. Just as theprocedure can give them more normal neurological responses, so, too,can it impart autistic responses, such as enhanced pattern-recognitionabilities, to non-autistic people, perhaps making them more productiveworkers. Are you concerned about the potential misuse of advancedtherapies, genetic and otherwise, that are being developed today? Whatsafeguards, if any, are in effect to prevent such misuse, by both thegovernment and the private sector?

EM: Any therapies that change brain function can be misused—thoughwhat constitutes misuse is presently the hot topic in this part ofbioethics. Recent articles in various journals have discussed the ethicsof memory enhancement (fine for Alzheimer’s patients, but what aboutcollege students?), attention enhancement (okay for fighter pilots, butwhat about college students?), and others. Fixing a neurological problemis one thing; enhancing one’s own performance is another; imposing therequirement to enhance someone else’s performance . . . slides over intomind control of a very literal kind.In my opinion, this is an area where research and clinical utility are out ahead of safeguards. Nobody wants to safeguard the Alzheimer’spatient from enhanced memory—that clearly improves the patient’squality of life. But should the college student take the same drug toimprove his ability to cram for a test at the last minute? Is it “fair” to giveyourself a better memory, or twenty points more IQ? Is it fair if yourparents, who paid for that expensive college, do it to you by sending youdrugged brownies? If your employer puts it in the punch at the companyChristmas party? Or, conversely, is it fair if your parents refuse to let youimprove your intelligence, when you are struggling, because they thinkyou’re just lazy? Experience shows that once a therapy exists, someone will find anew (and to many, a less ethical) use for it. “Safeguards” are put upafterward, trying to shut the barn door before all the horses get out.

PW: Has there been any interest from Hollywood? The part of LouArrendale would be an actor’s dream!

Paul Witcover: You’re known as a science fiction writer, but even thoughThe Speed of Dark is set in the near future, the world you depict is nottoo different from the world of today. Certain technology, such asgenetic engineering and nanotechnology, is more advanced than atpresent, but the society in which Lou Arrendale and the other characterslive and work seems contemporaneous. How much of a change of pacewas this novel for you? Is it science fiction? And if so, what makes itscience fiction?

Elizabeth Moon: This was definitely a change of pace. Occasionallyan idea or a character blindsides me and knocks me right out of what Iintended to do next. Whether it’s science fiction or not depends on thereader’s definition of science fiction. Although it’s set in the future (ornear future), the issues facing the characters are indeed those of today.

PW: What is autism? Is it a genetic condition? A mental illness? Theresult of an infection? Physical trauma? I’ve even heard infantimmunizations blamed.

EM: Autism is a pervasive developmental disorder. The diagnosticcriteria are found in DSM-IV (the Diagnostic & Statistical Manual ofMental Disorders published by the American Psychiatric Association),but this source is very much out of date for treatment and prognosis.Most children with autism are clearly born with it, and the best currentevidence suggests that something begins to be different in autistic fetuseswell before birth. It is not known whether maternal infections or traumacan cause this “difference.” It used to be considered a mental illness(which is why you find it described in the psychiatric literature), butit’s not currently given that classification. Since it occurs at higherfrequencies in families with other cases of autism and relatedneurological conditions, genetics certainly plays some role in many, if notmost, cases of autism. Some people will blame anything, howeverunlikely, and in the face of contrary data; there is no evidence that infantimmunizations cause autism.

PW: What are some of the warning signs that parents should be awareof? Where can people go for more information or help?

EM: The autistic spectrum includes a range of developmental disabilitiesthat are similar but not identical. Classical autism presents asdevelopmental delay, often global, but particularly affecting sensoryintegration; fine-motor coordination; language, both receptive andexpressive; and social interaction. The amount of delay varies widely.What a parent will notice first, most likely, is marked delay in languageacquisition, marked delay in normal social interaction, and veryrestricted activities/interests compared to other children the same age.The autistic child may not talk at all, or speak only to echo what he justheard, or repeat that jingle. He may ignore TV to sit by the bureauflicking the handles of drawers over and over. He is likely to do the samething hour after hour, day after day: stacking blocks, winding andunwinding string, some other repetitive activity. Autistic individuals havegreat difficulty learning to “read” the social cues the rest of us use—toneof voice, facial expression, etc. A child whose autism is milder, andundiagnosed until school age, will usually demonstrate very unevenabilities—excelling in one subject, and flunking in another—and willalso have the associated difficulty in reciprocal social interactions.

PW: Milder . . . Is this where Asperger’s Syndrome comes in?EM: Asperger’s Syndrome, which is related to autism in many ways,does not involve language delay—Asperger’s kids may talk early andfluently—but does involve delays and difficulties with social interactionsimilar to those in autism. As with classical autism, there is a wide rangeof severity. If a child talks “on time” but does not develop reciprocalsocial skills—can’t hold a conversation with turn-taking, doesn’t playwith others—that’s also cause for concern.All small children do things that autistic children do, all the lists ofbehaviors you may have seen in magazine articles, but normal childrenalso do much more. If they repeat advertising jingles ad nauseam, theycan also demand more cookies, ask questions, play pretend games withfriends, argue about bedtime. Normal children may also have strongidiosyncratic interests. I was horse-crazy, and made endless parades of mytoy horses. They may flap their hands, spin the wheels of toy cars, act shyand refuse eye contact, or be unusually sensitive to texture or taste, allwithout being autistic . . . if the rest of their development is comingalong at the usual rate, if these “autistic” behaviors aren’t the only onesthey have. Children do vary in their acquisition of social skills; they allhave to be “civilized” into the normal give-and-take of social interaction.What matters is not any particular behavior, but the overall pattern ofdevelopment.Since language delay has several causes, all of them important to achild’s future, any delay in talking should be checked out. The child mayhave a hearing loss or any of several other problems—autism is only oneof the possibilities—but the sooner the cause is identified and therapybegun, the better.Parents today have many resources. If they have a concern abouta child’s development, any of the basic books on infant and childdevelopment will give them some guidelines. Day-care and nurseryschoolteachers, who have seen hundreds of children, are also helpfulresources—they know when a given child is or isn’t makingdevelopmental milestones. Doctors vary in their understanding ofautism; some may be reluctant to make the diagnosis early because whenthey went to school it was a very bad one. But most family practitionersand pediatricians are at least familiar with the diagnostic criteria, and canhelp families determine if autism is a possibility.

PW: Lou Arrendale is an extraordinarily vivid creation. There have beenbooks and movies that feature autistic people before, such as Rain Man,but I can’t recall another treatment that gets inside an autist’s head asdeeply as you do here. I know you have an autistic son; how much ofLou is based on your son and your experiences in raising him?

EM: Our son was certainly the starting point and the inspiration—eighteen years of 24/7 experience provides a lot of information (he wasseventeen or eighteen when I started the book). In addition, I had readbooks by Oliver Sacks; Temple Grandin, who is herself autistic and a fineadvocate for the autistic community; Clara Park, whose autistic daughter,a talented artist, is now in her forties; and others, and had found onlinegroups of autistic individuals who demonstrated the wide variety ofpersonalities and abilities that autistic people have.Lou’s character is, however, quite different from that of our son; Louis the product of early intervention and educational advances that werenot available when our son was born. He’s also innately more intelligent,with a high IQ; our son’s is low normal. Lou is by nature a quieter andmore thoughtful person; our son is more exuberant.

PW: Despite being autistic, Lou functions better than many so-callednormal people. He has a job, friends, interests. He is highly intelligentand extremely sensitive to certain sensations and perceptions, such as, forexample, smells and textures. And his pattern recognition abilities, whichhe relies on in every aspect of his life, from his job at the pharmaceuticalcompany to his hobby of fencing to his interactions with others, arephenomenal. How typical is Lou of people with autism today in terms ofhis social skills and mental abilities?

EM: Here it makes a huge difference which generation of autisticpersons you’re talking about. Most autistic children born in the 1940sand before were characterized as having “infantile schizophrenia” andwere institutionalized early as hopeless (as in Rain Man). Only a fewexceptionally intelligent autistic children had the kind of support theyneeded to achieve independent living as adults. As late as DSM-IV, theprognosis was that only 30 percent of the most intelligent and capableautistic persons would ever live independently. However, with the adventof mandated public education for all students and early childhoodintervention, the situation has improved markedly. Social problemsare still the main reason for autistic persons not achieving fullindependence, but more and more of them are holding jobs and living inless sheltered environments. They are still earning less than non-autisticpersons of equivalent intelligence, and autistic persons who are alsoretarded or have another disability (physical or other) are still likely toneed lifelong assistance of some kind—but few now are consigned toresidential institutions. I expect that in the next five to ten years, aschildren who received good therapy in the birth-to-five-years rangereach adulthood, we will see a reversal of the DSM-IV prognosis, with60 percent or more holding jobs. Assuming, of course, that the economyimproves . . .Lou’s sensitivity to sensory input and his pattern-recognition skills,however, are common to most autistic individuals. Sensory perceptionand sensory processing differences are universal. If there is an autisticchild anywhere who tolerates tags in T-shirts or bulky seams in socks, Inever heard of one . . .

PW: How is autism treated today? Have you seen much progress sincethe birth of your son? Do you think that we are on track toward the sortsof advanced therapies available in your book?

EM: Autism is treated today in a variety of ways—the most useful beingintensive supportive therapy for young children. The earlier autism isdiagnosed, and the earlier families begin helping these children develop,the better the prognosis. Communication therapy (not just speechtherapy), sensory integration therapy, skills training (including socialskills training)—all these and other therapies, not necessarily the samefor each child, make an enormous difference. Autistic children docontinue to develop; what you have with an autistic toddler, anenormous and terrifying challenge, is not the limit of what’s possible.Certainly there’s been a lot of progress since our son was born. I hadto figure out a lot of things for myself—not much was available, at leastnot here. But after the legislation that mandated early childhoodintervention for disabled children, more and more people were workingin the field and soon began to discover what worked best. Positivereinforcementbehavioral shaping—more on the model of Karen Pryorthan the rigidity of the academics, in my opinion—works best.I definitely think that the sort of advanced therapy I wrote about iswithin reach; whether the research heads in that direction or not willdepend on funding. But in the process of writing this book, I wasreading an international neuroscience journal (Nature Neuroscience), andkept worrying that the science was catching up with the story all too fast.

PW: Lou is constantly questioning what it means to be autistic and whatit means to be normal. He comes to believe that the two are points alonga spectrum rather than wholly unrelated ways of being. I think this mustbe true because of my own experience in reading the novel. At first, Ifound Lou fascinating but alien; I could sympathize with him, but fromthe outside looking in. Then, as I read on, a curious and amazing thinghappened. I began to empathize with Lou. His way of thinking stoppedseeming alien to me and began to seem human. In fact, I began torecognize more and more of myself in him. When the demands of dailylife took me away from the book, his voice stayed with me, coloring myperceptions of the world, until I felt almost as if a part of me wereautistic. It was no longer possible for me to think of Lou as alien, and iteven became difficult to think of him as damaged, exactly. Just different.Which raises a lot of interesting practical and philosophical questionsabout autism . . . and not just autism.

EM: Doesn’t it, though! To a large degree, we (meaning society in itsjudgmental role) create aliens from humans by excluding them, bydefining them as too strange, too difficult. Human cultures have alwaysdone this. It helps a group to bond, if they define nonmembers ascompletely different. Cultures have defined other races, religions,nationalities, and even economic groups as “not really human” and thusoutside the rules that govern behavior in the group. And we’ve done itwith disabilities. Sometimes the disabled are treated as children (Weknow what’s best for you . . . ) and sometimes as monsters who must beconfined or even killed.

PW: The other side of this coin would be the criticism that you’vedescribed autism too well; or, rather, have romanticized it, made it seemappealing in its strangeness, as if to be autistic were to be like Star Trek’sData or Mr. Spock. How would you respond to this criticism?

EM:With a loud snort . . . No parent of an autistic child would everromanticize autism, or minimize the strain it places on both the child andthe society in which that child lives. Hours of screaming when nothingwould comfort him . . . cleaning up smeared feces . . . endless days andnights of struggling to understand the child’s communications, andcommunicate to him . . . nothing romantic about that at all. It was hardwork, and tough emotionally (on him as well as on us). For most of hislife, we had him 24/7, 365 days a year (ordinary baby-sitters can’tcope)—there were no nights out, no weekends off. Respite care, inthose days, was not available.But I definitely chose not to demonize autism, which is what manymagazine articles do: They treat autism as the worst, most horrible, mostalienating of the developmental disabilities, a complete and utter tragedyfor families, a wasted life with no possibility of joy or fulfillment. That’ssimply not the truth. The autistic child is a fully human child, capable ofreceiving and giving love, capable of enjoying and giving pleasure. Theautistic persons I met online, even when they described themselves asalien, demonstrated all the common human emotions and desires: Theywant to be around people who understand them, who like them as theyare. They want to have a comfortable living and working environment,to be treated with respect and dignity. They want to eat what tastes goodto them, and avoid what tastes bad. They want friends who share theirinterests; they want to enjoy life in their own way. If they believethemselves to be alien, it is because we, the “normals,” have told themover and over how impossible they are. We try to insist that they mustbecome like us to be acceptable—which makes about as much sense asinsisting that someone change his skin color or eye color or height.

PW: What feedback have you received from autists and members of theautistic community, parents, and researchers?

EM: Very positive so far. Several autists have contacted me and told methey like the characterization of Lou. I hear from parents and special edteachers that the book is beginning to spread through their communities(parents and teachers of autistic children are busy people and rarely findthe time to read books when they first come out). Researchers I wouldimagine are focused on their research and pay little attention to fictionwritten on their topic.

PW: Your novel has been compared, perhaps inevitably, to Daniel Keyes’sclassic, Flowers for Algernon. Do you think the comparison is valid?

EM: I think it’s flattering—that is a great story. On the other hand, mostpeople who’ve read both have ended up concentrating on the contrastsrather than the similarities.

PW: The title of the novel, The Speed of Dark, often contrasted byLou with the speed of light, becomes a metaphor for a lot of things:prejudice, ignorance, death. It is also, more generally, the unknown.How did your understanding of this phrase evolve in the course ofwriting the novel?

EM: When a title really works, it begins to resonate with more and moreelements of the story and its underpinnings . . . and this happened tome. At first it was more a clever than a wise choice. (It’s one of the fewplaces where our son “appears,” since he gave me the title one day earlyon. He came in, leaned on the doorframe, and said, “If the speed of lightis 186,000 miles a second, what is the speed of dark?” I gave the usual“Dark has no speed” answer, and he said, “It could be faster. It’s therefirst.”) But in the writing, the other metaphorical connections formed.The book grew after Lou, in a way, following him in a somewhatdifferent direction than I had expected.

PW: I had the same reaction to the “speed of dark” question when Louraises it in the novel. But then I realized that it was exactly the sort ofquestion Einstein was famous for asking himself; in fact, I recently readan article that speculated that Einstein might have had Asperger’sSyndrome.

EM: Many scientists and engineers have behavioral traits found in theautistic spectrum; there’s been speculation about Einstein for years. But wesimply don’t know enough about his childhood to make a firm diagnosis.There are other causes for language delay, and someone can be obsessive,absentminded, socially inept, and brilliant without being autistic. Still, itcould be true. The more we’ve learned about the autistic spectrum, themore it’s clear that many people are “a little autistic”—share some of thesame behaviors, to a lesser degree—and yet function well in the world.

EM: Having a child with autism changed my views on autism andnormality . . . writing the book gave me the chance to share those views.

PW: Did it change your relationship with your son?

EM: No. Our son is himself, not a fictional character, and ourrelationship is the product of almost twenty years of interaction. He hasno interest in the book. I tried to read him bits of it while I was workingon it, to get his reaction—and his reaction was to zone out.

PW: If the cure that is offered to Lou and his fellow autists were availabletoday, would you want your son to try it, despite the dangers?EM: I don’t know. One of the great challenges for any parent of a childwith disabilities is how to love the child as he/she is, and yet remain opento change that may be beneficial. Some people come down hard on oneside or the other of this: the parents who insist that they would neverwant their disabled child to be cured because that would invalidate theirlove for the child as he/she is, versus the ones who insist that everyoneshould leap at every chance at a cure. I can’t. Part of it is his age now. Attwo, three, four, five, I would have taken a “magic bullet” cure in aheartbeat, assuming that it had to be better than where he was. Now?Our son at this point is an enthusiastic, happy, loving young man,eagerly learning what he can in special ed classes in his high school.Losing any of those characteristics would be a terrible loss. But if hecould talk easily with the girls he so admires, if he could use his bodyand mind more easily, that would be a great gain. If/when such therapybecomes available, it will have to be his decision.

PW: It turns out that Lou’s company is not acting altruistically inoffering Lou and his fellow autists the chance for a cure. Just as theprocedure can give them more normal neurological responses, so, too,can it impart autistic responses, such as enhanced pattern-recognitionabilities, to non-autistic people, perhaps making them more productiveworkers. Are you concerned about the potential misuse of advancedtherapies, genetic and otherwise, that are being developed today? Whatsafeguards, if any, are in effect to prevent such misuse, by both thegovernment and the private sector?

EM: Any therapies that change brain function can be misused—thoughwhat constitutes misuse is presently the hot topic in this part ofbioethics. Recent articles in various journals have discussed the ethicsof memory enhancement (fine for Alzheimer’s patients, but what aboutcollege students?), attention enhancement (okay for fighter pilots, butwhat about college students?), and others. Fixing a neurological problemis one thing; enhancing one’s own performance is another; imposing therequirement to enhance someone else’s performance . . . slides over intomind control of a very literal kind.In my opinion, this is an area where research and clinical utility are out ahead of safeguards. Nobody wants to safeguard the Alzheimer’spatient from enhanced memory—that clearly improves the patient’squality of life. But should the college student take the same drug toimprove his ability to cram for a test at the last minute? Is it “fair” to giveyourself a better memory, or twenty points more IQ? Is it fair if yourparents, who paid for that expensive college, do it to you by sending youdrugged brownies? If your employer puts it in the punch at the companyChristmas party? Or, conversely, is it fair if your parents refuse to let youimprove your intelligence, when you are struggling, because they thinkyou’re just lazy? Experience shows that once a therapy exists, someone will find anew (and to many, a less ethical) use for it. “Safeguards” are put upafterward, trying to shut the barn door before all the horses get out.

PW: Has there been any interest from Hollywood? The part of LouArrendale would be an actor’s dream!